Anyone with AF got any experience with taking either Zanubrutinib or R&V

[Ageon]

Hi

I have just returned home after a session with my CLL consultant. Initially my consultant was happy to start me on Zanubrutinib (Brukinsa) the following day but subsequently he called me to tell me that following discussions with his other CLL colleagues their advice was that because of my AF then the R&V treatment would be a less riskier and more suitable option.

Unfortunately, my CLL consultant is leaving the hospital this week so I am being transferred to one of his colleagues who I will meet in 2 weeks time where a decision about what treatment I should embark on will be made.

I was previously treated with Obinutuzumab and Chlorambucil for 5 sessions and this proved to be very effective as my bloods all returned to ‘normal’ very quickly and I have remained very well during and after the treatment. I remained in remission for 4 years but my bloods have now shown that my CLL is back so I will need to start treatment again as soon as possible.

As mentioned, I have AF which was diagnosed about 13 years ago and I have been on a blood thinner (initially Wafarin but now Apixaban) as a treatment. I have also developed reduced kidney function which has apparently been caused by my CLL. Immediately following my previous CLL treatment my kidney function improved quite significantly and my consultant is hopeful that this will be the same once I commence my follow up treatment.

The alternative for me seems to be the R&V treatment which I am quite nervous about. I guess the benefit of this treatment is that it is time limited (2 years) whilst Zanubrutinib is 4 tablets daily for life.

Has anyone with AF got any experience with taking Zanubrutinib or R&V so I can evaluate what treatment is suitable for me?

Appreciate any advice.

Thanks

[mrsjsmith]

Morning,

I am sorry you haven’t, as yet, received any replies because it would be of interest to me as well. I was until Christmas happily taking Ibrutinib until it was discovered I also have aFib. I have also been put on Apixaban and waiting for consultation between my consultants and cardiologists. Good luck.

Colette

[Ageon in reply to mrsjsmith]

Thanks for your reply.

[LeoPa]

Hi. BTK inhibitors are known to cause or worsen AFib. R + V seems to be a better choice for you. Not my experience just what I learned on this site from Reading comments.

[Ageon in reply to LeoPa]

Thanks for your response. You are right my new CLL consultant explained that there is an unknown risk with taking Zanubrutinib for those who have AF.

[GRMat158]

Hi,

My consultant discovered that I had AF when doing my check up prior to starting treatment in a clinical trial of Zanubrutinib in 2019 - came as a surprise to her and to me as I had initially had FCR back in 2013 and had been seeing her regularly for check ups since then!

This did not impact her decision though and I have been taking Zanubrutinib since then (as you say, four tablets daily). To start with there was no action taken on the AF but I have since been put on Apixaban.

As LeoPa said, BTK inhibitors do list AF as a potential side effect. I am not qualified to make any comparison with R+V. All I can say is that to the best of my knowledge my AF has not got any more troublesome (so far) due to taking Zanubrutinib and the drug has been very effective in controlling my CLL.

Hope that helps

[mrsjsmith in reply to GRMat158]

Thank you,

I am anticipating that Zanubrutinib would be my next option 🤞

Colette

[Ageon in reply to GRMat158]

Thanks for your reply. because of the risk that has been explained to me I have agreed to start 2nd line treatment on V + R.

[MN1999]

I developed AFib while on Imbruvica. Switched to V since Imb quit working anyway. AFib is much less of a problem and I'm not on any meds for it altho I remain very sensitive to caffeine.

[Ageon in reply to MN1999]

Thanks for your reply.

[Thundercat2]

Hello Ageon,

I started treatment with Obin and Ibrutinib 4 years ago. I had had Afib before that and we knew it might become an issue on the Ibrutinib. After 4 months on IB I had an episode and along with severe joint pain we decided I should come off. I then went through a series of tests with a cardio-oncologist to see if trying Acalabrutinib would be ok. The cardio-onc said it would be as my heart is otherwise healthy (No other heart disease as such) and the Afib was a rare occurence.

When it came time to re-treat however, I chose O +V, as it seemed a better option to try to eliminate potential Afib episodes (and the joint pain wasn't fun either). I went through a year of that treatment but had one repeat Afib episode about a year in. It only lasted about 10 hours and thankfully I converted out of it on my own. Was it due to the drugs? Who knows? Its very random for me.

I've been in remission for a year now and feeling very well. I still suffer with palpitations at times which are bothersome but manageable. I'm on a baby aspirin only thus far --ok'd by my cardiologist. I would still be open to trying one of the new BTKI's when and if needed, but the O+V has been good for me thus far. According to my specialist I am in a very deep deep remission. I think R +V would be similarly beneficial.

One last thing (sorry for the long spiel). I have learned a lot about Afib and manage to live with it fairly well. It's not quite as fearful to me as it once was. Everyone is different, but the biggest concern from what I understand is stroke risk and that can also be managed.

Wishing you the best!

Tcat

[Ageon in reply to Thundercat2]

Thanks for your respone. After discussing the options with my new CLL specialist I will be starting treatment on V + R next month.

[Thundercat2 in reply to Ageon]

I think you will be happy with your choice. I was. Good luck to you and keep us posted!

[skipro]

Through my studies I’ve seen that any BTKi like ZANU can increase the risk of a-fib

I’ve not seen any data implicating V + O in Afib development or worsening

I’m currently 11 months in on V + O and will be on V for 2 years as I relapsed 2 years after FCR. So far fatigue, some nausea and muscle pain are the biggest but manageable symptoms.

I think a thorough cardiac work up would be in order before considering a BTKi

God bless and good luck

Skipro

[Ageon in reply to skipro]

Thanks for your reply. Having had a consultation with my new CLL specialist I have agreed to start treatment with the V + R option.

[skipro in reply to Ageon]

I hope and pray it works amazingly for you

[CoachVera55]

Hello Ageon, I do not have an Afib diagnosis but did experience runs of palpitations on Acalabrutinib. However I blame it on an untreated Lung Infection because altho I switched to Zanubrutinib low dose I still was having them, but once the infection cleared up I have not had one since.

Quick background; I started full dose on Zanubrutinib & 13 days on the drug I experienced chest pain after 60min of moderate exercising on my stationary bike. The ER picked on PVCs on my EKG but labs, Chest Xray, CT Scan & Echo were neg for a Heart Attack but positive for Pleurisy -Bibasilar Subsegmental Dependent Aetelectasis which the ER, Onc & Pulmonologist choice to ignore. I had to return to the same ER 48hrs after discharge & then the CT Scan spelled it out clearer - Left Pleural Effusion, Pneumonia vs Aetelectasis. I still was sent home with just steroids but that is when I switched to 1/2 dose Acalabrutinib. The infection was growing & festering until I experienced chest pain for the 3rd time 10.5 wks later.

I got a 10 day dose of antibiotics & slowly my symptoms subsided but I could only tolerate 1/4 dose of Zanubritinib. I was still feeling palpitations but they eased up & never came back. After 3 months & being cleared by CLL Specialist’s new Pulm & Cardio Team I went up to 1/2 dose. My numbers are mostly normal this 3rd month & I am back to working out since I put on 30lbs. I suffer all the commom side effects but they’re somewhat manageable now that I can identify & mitigate the side effects for the most part. My platelets dropped initially when I increased my dosage but bounced back. Bleeding is a big risk too especially on blood thinners.

All the best with your next choices & btw I heard that noncovalent BTKIs have even less side effects.

Brief explanation of benefits vs risk

[Ageon in reply to CoachVera55]

Thanks for your response.

[Skyshark]

R+V is Rituxan and Venetoclax. Rituxan is a CD20 monoclonal antibody like the Obinutuzumab you had before but you may react differently. Venetoclax is a BCL2 drug, this prevents the mitochondria in CLL B-cells working, killing the cell. People tolerate both quite well.

Chlorambucil is a chemotherapy drug, it damages DNA of dividing cells. Venetoclax doesn't do that, it's a targeted drug that hits the spot better than most ([fx cough] BTKi), though they aren't too sure why as other cells express BCL2.

You have done well to get 4 years remission from O+Chl. It's one of the weaker chemo treatments given to people that are considered unfit for harsh FCR or even BR chemo. VenR can give a similar or longer drug free remission and can be given a 2nd time. It will still be there waiting after BTKi.

The time you can be on BTKi may be short if worsening heart issues cause problems the doctors can't manage. One of BTKi's off target side effects affects the heart. With age the risk of further heart problems increases. They are not so keen on it for you now and it's even less likely to be advisable/available at all by the time you need treatment again after VenR. If BTKi is taken before VenR it could mean that you are no longer fit to enjoy the drug holiday.

Choice is a vexatious thing and CLLer's are spoilt for choice.

[Ageon in reply to Skyshark]

Thanks for your response Skyshark which I found very reassuring. I start VenR next month!